- Email: [email protected]
Diagnosing women with HPV: The impact of diagnosis disclosure methods
Patient Education and Counseling 88 (2012) 152–156
Contents lists available at SciVerse ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Patient perception, preference and participation
Diagnosing women with HPV: The impact of diagnosis disclosure methods Jacquelyn A. Harvey-Knowles a,*, Kami A. Kosenko b a b
Department of Communication, University of Washington, Seattle, USA Department of Communication, North Carolina State University, Raleigh, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 4 October 2011 Received in revised form 30 December 2011 Accepted 1 February 2012
Objective: Little data exists on women’s HPV diagnosis encounters. This research focuses on impacts of the communicative medium used to inform women of their HPV status. We conducted a qualitative study to identify the mediums used to communicate HPV diagnoses and the impact of each medium on the diagnosis experience. Method: Twenty-five women with HPV completed semi-structured interviews, which we recorded and transcribed. We relied on grounded theory techniques in both data collection and analysis. Results: There are three primary mediums health care providers use to inform women of their HPV diagnosis: phone calls, mailed letters/email, and face-to-face interactions. Implications regarding each medium are identified and discussed. Conclusion: There are drawbacks associated with the use of each medium that healthcare practitioners should be aware of and seek to avoid. Practice implications: Healthcare providers can utilize descriptions of diagnosis encounters and the recommendations accompanying them to understand and modify ways they choose to inform individuals of an HPV diagnosis. Published by Elsevier Ireland Ltd.
Keywords: Diagnosis Women’s health Qualitative Sexual health Illness and disease
1. Introduction Human papillomavirus (HPV), the most common sexually transmitted infection in the US, affects approximately 20 million women. Virologists have identified more than 40 different strands of HPV that can be sexually transmitted and cause different reactions in the host [1]. Although some infections resolve spontaneously and cause little to no symptoms, others can result in genital warts, recurrent respiratory papillomatomis (RRP), and/ or cancers of the vagina, vulva, anus, penis, and cervix [1,2]. It has been estimated that approximately 75% of women who are sexually active will be diagnosed with HPV during their lifetime [3]. Although HPV is not curable, some strands are preventable. In 2006, the Food and Drug Administration approved the first HPV vaccine. The vaccine protects individuals from strands 6, 11, 16, and 18, two of which (16 and 18) cause approximately 70% of all cervical cancers [4]. Although the vaccine is now available, it will take time to create a noticeable reduction in the number of individuals infected [2]. In addition, the vaccine is only available to women under the age of 26, leaving a large number of the
* Corresponding author at: University of Washington, 340M CMU, Box 353740, Seattle, WA 98125, USA. Tel.: +1 919 438 7055; fax: +1 206 616 3762. E-mail address: [email protected] (J.A. Harvey-Knowles). 0738-3991/$ – see front matter . Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2012.02.002
population unable to be vaccinated. As such, many health organizations are now making routine HPV testing and screening a priority. Research indicates that participating in these tests and receiving a HPV diagnosis can create considerable psychosocial stress. Studies have highlighted negative consequences including depression, sleep disturbances, psycho-somatic responses, and sexual impairments. For example, of the 489 individuals with HPV surveyed by the American Social Health Association (ASHA), 75% reported feeling depressed and/or angry about the diagnosis and 66% described feeling ashamed. In addition, more than 50% commented on the lack of emotional and informational support offered by their health care providers [5]. Given that information and social support moderate the negative effects of HPV testing and diagnosis [4], this lack of support is of particular concern. With more women being screened for, vaccinated against, and/ or diagnosed with HPV, patient education and counseling efforts are increasingly important; however, few, if any, studies address patient experiences and perceptions of provider support during HPV diagnosis. The current study aims to fill this gap by addressing the following research questions: RQ1: How are women informed of their HPV status? RQ2: How do diagnosis experiences impact women with HPV?
J.A. Harvey-Knowles, K.A. Kosenko / Patient Education and Counseling 88 (2012) 152–156
2. Method As part of a larger study on stress and coping with HPV, we collected qualitative descriptions of women’s diagnosis experiences. In the sections that follow, we describe the participants recruited and procedures employed in this study.
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or insight related to any of the topics of discussion. We distributed a description of the categories and subcategories, along with illustrative quotations, to a small subset of participants who assured us of our categorical system’s accuracy and completeness. These member checks with five participants gave us confidence in the validity of our findings.
2.1. Participants 3. Results Twenty-five women living with HPV voluntarily completed semi-structured interviews ranging from 14 to 72 min in length. Thirteen (52%) participants self-identified as White, seven (28%) as African American, two (8%) as Latina, two (8%) as Asian American, and one (4%) as biracial. Participant ages ranged from 19 to 56 years (M = 28.84; SD = 8.56). The majority of participants (68%) indicated that they were single; six (24%) were married and two (8%) were divorced or separated. Time since diagnosis ranged from 1 to 17 years (M = 4.84; SD = 4.74). 2.2. Procedure To recruit participants, we hung advertisements in public libraries, coffee shops, grocery stores, and buildings on college campuses. We also distributed study announcements via electronic bulletin boards, social medial websites, and online support groups. Recruitment materials contained a description of the study (i.e., ‘‘one-on-one, face-to-face interviews’’), the inclusion criteria (i.e., women ages 18 or older who had been diagnosed with HPV), and researcher contact information. We also offered a $15 incentive for participation. Potential participants contacted us via email or telephone, and we arranged interviews with those who met the study criteria. We began each interview with the participant signing an informed consent document and completing a short demographic questionnaire. Then, we described the purpose of the project and requested permission to audio-record the discussion. We structured the interview chronologically, beginning with questions about the participants’ experiences at the time of diagnosis followed by a series of questions about their current experiences managing HPV and its associated stress. Although the women’s current experiences with HPV are beyond the scope of this paper, we analyzed the interviews in their entirety and determined saturation on all topics covered, not just the ones addressed in this paper. Grounded theory methods informed our approach to data collection and analysis. For example, we collected and analyzed data simultaneously, which allowed us to assess emerging themes and pursue particularly fruitful lines of inquiry. Concurrent data collection and analysis also helped us determine when we had reached theoretical saturation, the point at which ‘‘no new insights, codes or categories are produced even when new data are added, and when all of the data are accounted for in the core categories and subcategories’’ [6]. Data analysis involved the use of constant comparative and latent content analytic techniques [7,8] and proceeded in stages. First, we completed open coding, in which ‘‘concepts are identified and their properties and dimensions are discovered in the data’’ [9]. Once each author had completed the open coding process, we met to compare and compile our findings. In the second stage, each author returned to the transcripts to complete axial coding, which involved ‘‘relating categories to subcategories’’ [9]. After independently reviewing the transcripts, we met once more to discuss the findings and come to a consensus on the categories and subcategories identified. We resolved any coder disagreements through discussion and continued to interview participants to test and refine our categorical system. Interviews proceeded until they produced no new information
Health care providers delivered the HPV diagnosis in one of three ways, each of which was deemed problematic by at least some of the participants. Participants received their diagnosis over the phone, in mailed letters and emails, and in face-to-face discussions with health care providers. Both the medium and message strategies employed by health care providers influenced how women coped with the diagnosis and evaluated the provider’s supportiveness. Each medium employed and its impact on participants is described below. Names referenced in the following sections are pseudonyms. 3.1. Diagnoses by phone Twenty-five percent of participants were notified of their HPV diagnosis over the phone. Results indicated that the use of this medium created (a) privacy management concerns and impacted participants’, (b) information-seeking strategies. 3.1.1. Privacy management Privacy management issues arose for women informed of their HPV status over the phone. Most participants who were informed in this manner mentioned receiving the phone call at a time when they were not free to talk. Alexandra explained, ‘‘I was in class, and they were calling me. . .I stepped out to go listen to the voicemail because it freaked me out.’’ Katie stated: ‘‘I was told at work. . .I mean, I basically didn’t want these people to know. . . Now at that point, over the phone, I didn’t ask questions.’’ Laura had a similar experience: ‘‘They called my work number. . .I was just like, ‘I just can’t discuss it right now; I’m at work.’’’ 3.1.2. Information seeking Privacy management issues precluded information seeking during phone diagnoses, leaving women with a number of unanswered questions. Participants sought answers to their lingering questions in one of two ways: (a) by researching HPV information online or (b) by re-contacting one of their healthcare providers at a time when privacy was not a concern. For example, Michelle stated, ‘‘I didn’t know too much about it prior to hearing about it, but then I did research and stuff.’’ Eileen mentioned doing the same: ‘‘We had to sit down and look it up on the Internet.’’ For Nina, relying on the Internet for information about HPV was not without its problems: Well, it made me really get on the Internet and do my own research, which can be helpful, but it can also be very harmful. And, I became very obsessive about checking the Internet every day. Was there new research? Instead of seeking information online, some participants chose to re-contact their health care providers to ask questions. As Laura explained, ‘‘I called back and actually spoke to one of the nurses who had come into my job frequently. I felt comfortable talking with her.’’ Michelle did the same after her initial phone diagnosis: ‘‘When I went in for follow-up, we talked about it.’’ For participants diagnosed over the phone, privacy concerns prevented information seeking at the time of diagnosis; consequently, some turned to the
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Internet and others waited until their next appointment to get their questions answered. 3.2. Diagnoses by letter or email Twenty-nine percent of participants were notified of their HPV status through either a mailed letter or email. Comments from these participants indicated that email and letter diagnoses undermined (a) the support process and (b) women’s ability to make sense of the diagnosis. 3.2.1. The support process Most women who were informed of their status via a letter or email expressed dissatisfaction with this notification method. Letter and email diagnoses did not allow women to ask questions or providers to offer support. As such, women informed in this manner described feeling scared and alone. For example, Tori mentioned feeling ‘‘terrified’’ by the letter, stating, ‘‘It would have been better to get like face to face contact or to, like, I guess some people have you come back to get your results.’’ Rachel shared a similar experience: The email was really like very cold and like to the point. . .So, yeah, I think it was probably one of the worst ways to find out that there’s something wrong with you. . .I just felt like my world was ending. . .And I had all these questions. I didn’t know where to go or who to talk to. Although most women expressed dissatisfaction with this notification method, some participants informed in this manner had more positive experiences. Tilda provided one such example: Luckily, I don’t know if this is just the practice of my doctor’s office, but they write a note like, ‘‘Hey, it’s okay. This isn’t like a mega big deal. . .We’re going to be here for you. There’s no real reason to worry yet.’’ That kind of stuff. So that was really reassuring. That kind of dulled the ‘‘Oh my God’’ of the letter. . .that made me feel like this is manageable, you know, it’s going to be okay. Tilda described a situation in which message strategies employed by her health care provider were able to overcome limitations of the communication medium employed. In general, participants perceived letters and emails to be an impersonal and ineffective notification method; however, the efficacy and effects of this method were at least partially dependent on the messages contained in the letters and emails. 3.2.2. The sense-making process Email and letter diagnoses left no room for questions or discussion, which made it difficult for women to make sense of the diagnosis. Women informed in this manner described feeling confused and uncertain about the meaning of the diagnosis. As Rachel explained, ‘‘I was scared to death. I didn’t know what that meant. . .I was really confused.’’ Telesha also had trouble making sense of the diagnosis. She stated, ‘‘I was a little confused and I didn’t know – I didn’t understand – because, when I was 18, I got the Gardisil. And, so, I was under the impression that I’d be okay.’’ Unlike Rachel who had never heard of HPV prior to being diagnosed, Telesha had been informed about and vaccinated against the virus. Even armed with knowledge about HPV and a vaccination, Telesha still experienced problems making sense of her diagnosis. All participants diagnosed in this manner described making follow-up appointments to facilitate sense making. As Telesha explained, ‘‘I made a follow up visit because I was confused. . .So, we sat there, and we talked about it.’’ Tori also contacted her health
care providers: ‘‘I immediately called and talked to them and said, ‘I just got this yesterday. I don’t know what I’m supposed to do. . .I really don’t know how this works at all.’’’ At first unable to make sense of the diagnosis, Telesha and Tori found some answers to their questions when they made follow-up appointments. For participants, email and letter diagnoses contributed to support challenges and sense-making difficulties. 3.3. Diagnoses during face-to-face interactions Forty-six percent of HPV diagnoses were communicated during a face-to-face interaction. Participant comments indicated effects of this medium on the kinds of (a) information and (b) support sought and received. 3.3.1. Information Unlike phone diagnoses, which restricted women’s ability to share and gather information, face-to-face diagnoses provided a forum for questions and discussion. One common feature of faceto-face diagnoses was the provision of informational pamphlets. As Meg explained, ‘‘Most doctors tell you your diagnosis, and then you just walk out of the office. This particular doctor actually told me my diagnosis and gave me pamphlets so that I could read about it.’’ Jenna mentioned a similar experience: ‘‘She [her physician] gave me a pamphlet about all of it. . .It did the whole ‘one out of four girls have it,’ so that helped a lot.’’ Although face-to-face diagnoses gave women a chance to seek information and support from their providers, some participants described being too emotional to take advantage of this opportunity. As Jenna explained, ‘‘I felt horrible. I was a mess. I was too in shock. . .to ask questions.’’ When the shock subsided, these women, like those diagnosed over the phone, sought answers to their questions online. Christine provided one such example: I had no idea what this thing was, and my doctor’s telling me like, ‘‘Oh you have this HPV infection’’. . .And, I kind of freaked out. . .I don’t think I asked her too many questions at that point cause I was just kind of like taken aback by it all. . . I know that I did a lot of research on my own afterwards – a lot of online research. For participants, face-to-face diagnoses influenced the kinds of information received (i.e., informational pamphlets) and the information-seeking strategies employed (i.e., searching for online information once the shock subsided). 3.3.2. Support Unlike email/letter diagnoses, which undermined the support process, face-to-face diagnoses facilitated supportive interactions. For example, communicating the diagnosis face-to-face allowed the health care provider to offer emotional support, often in the form of nonverbal comforting behaviors. As Tara stated, ‘‘My doctor. . .she was holding my hand and told me I had nothing to worry about. She really put me at ease about the whole thing.’’ Jill also stressed the importance of nonverbal communication: I definitely got to talk with a nurse there about it. . .I think they probably made twenty minutes for me to just talk. . .Before I actually left that building and walked out onto the street and was by myself again, there was somebody there listening to my confusion. Altogether, many of the face-to-face diagnoses appeared to provide women with both verbal and nonverbal feedback that was comforting and reassuring. This advantage was lacking in phone and email diagnoses.
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Although many women described receiving emotional support during their diagnosis, others experienced less supportive responses. Similar to email, letter, and phone diagnoses, the effectiveness of face-to-face diagnoses seemed to hinge on message strategies employed by providers. As Rachel stated, ‘‘The doctor was very blunt, like ‘Yeah, you have HPV,’ and did not explain anything. . .It was a really horrible.’’ Wanda also felt that she received little support or information at the time of diagnosis, stating, ‘‘They just told me that I had it, but they didn’t really go in to details as to what it was.’’ Maggie described an experience in which she tried to ask her doctor questions but received only short responses: The doc was like, ‘‘It’s no big deal. Yeah, it’s HPV.’’ And, I was like, ‘‘What do I need to do about it?’’’ She was like, ‘‘Nothing.’’ I was like, ‘‘Is there a medication?’’ ‘‘No.’’ I’m thinking, ‘‘Oh my goodness, will it just go away?!’’ Overall, women’s satisfaction with face-to-face diagnoses varied, depending on the message strategies employed by the health care provider. 4. Discussion and conclusion 4.1. Discussion This study offered insight into the diagnosis experiences of women with HPV. Findings indicated that health care providers delivered HPV diagnoses in one of three ways: over the phone, in a letter or email, or during a face-to-face discussion. Participants described issues with each method. Phone diagnoses created privacy management issues and complicated information-seeking efforts. Email and letter diagnoses undermined sense-making and social support processes; however, supportive messages contained in the emails/letters provided women with some measure of comfort. When participants were diagnosed during face-to-face interactions, some described receiving helpful pamphlets and emotional support; others mentioned less supportive responses from providers. Each of these findings warrants further attention and discussion. 4.1.1. Perceptions and evaluations of each method One fourth of the sample was informed of their HPV status over the telephone. Most of these participants expressed dissatisfaction with the use of this medium, citing privacy issues. Women described receiving these phone calls while at work or in class and not requesting or offering information for fear of being overheard. These findings echo recommendations for bad news delivery put forward by various medical organizations, which stress the importance of delivering bad news in person and in a quiet, private setting [10]. These recommendations also have been validated in various studies of patient and provider preferences for the delivery of bad news. For example, in a study examining concord and discord between patient and provider perceptions of and expectations for bad news delivery, patients, nurses, and physicians each rated privacy and face-to-face discussion as essential elements of the effective communication of bad news [11]. Given that the effective communication of bad news has been linked to important outcomes such as patient compliance with treatment regimens and emotional adjustment [12,13], patient preferences for face-to-face as opposed to phone diagnoses should be given consideration. Despite a growing body of research on email communication between patients and providers [14], few, if any, studies have explored bad news delivered via email. For the women in this study, the use of email for bad news delivery proved extremely
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dissatisfying. In fact, one participant argued that email ‘‘was the worst way to find out’’ about her HPV status. These findings lie in contrast with studies documenting widespread patient interest in and desire for email contact with their physicians [15–17]. Physicians, in previous studies, have expressed less enthusiasm about email communication with patients, citing privacy concerns, billing issues, and potential misuse [18,19]. Findings from this study suggest that both patients and providers should be concerned about the use of email for bad news delivery. Although participants were largely satisfied with face-to-face diagnoses, some women mentioned problematic interactions with providers. In addition, some women who were notified via email or letter described their experience positively, citing a provider’s communication skill and message construction as key. Taken together, these findings indicate that messages, not just communication channels, influence patient perceptions of the diagnosis experience. These findings also highlight particular message strategies deemed helpful and unhelpful. For example, personalized notes included in letter or email diagnoses seemed to provide some measure of comfort to women diagnosed in this manner. In contrast, providers’ curt responses to questions asked during faceto-face diagnoses left women feeling unsupported and unsatisfied. Regardless of the channel employed to communicate a diagnosis, providers should be mindful of their message strategies and potential message effects. 4.1.2. Effects of each method In addition to describing the notification methods of their providers, women with HPV explained how they reacted to and were impacted by these methods. For example, privacy issues prevented women from asking questions during phone diagnoses, prompting women to go online to get answers to their questions. Women who were too shocked and overwhelmed to ask questions during face-to-face diagnoses also turned to the Internet. These findings complement the growing body of research on online health information. Patients’ increasing reliance on the Internet has sparked considerable interest in and concern about the quality of online health information [20]. Scholars have explored website quality in various illness contexts, including cancer [21], depression [22], osteoporosis [23], and asthma [24]; however, few, if any, studies have explored the quantity or quality of online information about HPV. Given women’s reliance on the Internet for HPV-related information, further research is needed to assess the amount, accessibility, and accuracy of information about HPV on the Internet. Participants also described the effects of the notification strategies on their perceptions of and experiences with social support. For example, email and letter diagnoses left no room for information exchange or the provision/receipt of emotional support; whereas, face-to-face diagnoses allowed the health care provider to offer informational support, often in the form of pamphlets, and emotional support, usually involving nonverbal comforting behaviors. Not all face-to-face discussions were perceived as supportive or helpful, though. Provider communication skill or style contributed to women’s satisfaction with the provider and the notification strategy. This may be due to the fact that many physicians less experienced in providing prognostic information feel greater stress when doing so [25], which can hinder their ability to be supportive. Shields et al. provides a remedy to this as their research findings suggest that health care providers should use a tone of voice that indicates care and concern, conveying a willingness to discuss prognosis issues [26]. Communication skills training might also be an effective way to enhance providers’ supportive communication. Researchers believe that ‘‘communication becomes an important, if not the primary, element in provider and patient relationships,’’ [27]
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suggesting that training for these situations is important and beneficial. 4.1.3. Study limitations Several study limitations should be acknowledged. First, difficulties recruiting women with HPV necessitated snowball and convenience sampling, which may have lead to a selection bias. Although this might influence the generalizability of the study, it does not undermine its internal validity. In addition, men were not recruited for this study and represent an understudied group in the literature on HPV. Although the lack of appropriate and effective testing procedures for men complicate research efforts with this population, future research must attend to the psychosocial impact of HPV infection and diagnosis on men. As Waller et al. argued, ‘‘It is perhaps time to reframe cervical cancer as a problem that should concern women’s sexual partners, or the wider community, and not just women themselves’’ [2]. 4.2. Conclusion This study is unique in the fact that it explores the channels and messages that providers use to inform women of their HPV status. It provides evidence that there are flaws inherent in each type of notification method. By identifying these constraints, this study provides practitioners with the opportunity to understand benefits and drawbacks of each method, giving them the ability to modify or revise their own strategies. 4.3. Practice implications Study findings indicate some ways in which providers might modify or revise their notification strategies. First, providers should be mindful of the privacy issues associated with phone diagnoses and the potential impact on a patient’s ability and willingness to share and request information. As such, contacting a patient by phone might be advised when the news is positive but avoided when the news is negative. Emails or letters to patients might save time and money; however, the use of these channels can undermine support and sense-making processes. To facilitate these processes, providers who use email or letters to inform patients about their diagnoses should consider including personalized notes, informational pamphlets, and/or links to quality websites and online support groups. Face-to-face delivery of bad news, though seemingly preferred over phone, email, and letter diagnoses by women with HPV, still requires some communicative finesse. Regardless of the notification strategy they employ, providers must remain adamant in their efforts to communicate care and concern when diagnosing a patient. We confirm that all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.
Acknowledgements The authors received no financial support for this study and report no conflicts of interest.
References [1] Daley EM, Perrin KM, Vamos C, Webb C, Mueller T, Packing-Ebuen JL, et al. HPV knowledge among HPV-positive women. Am J Health Behav 2008;32:477–87. [2] Waller J, McCaffery KJ, Forrest S, Wardle J. HPV and cervical cancer: issues for biobehavioral and psychosocial research. Ann Behav Med 2004;27:68–79. [3] Frazer JH, Cox JT, Mayeaux EJ, Franco EL, Eduardo L, Moscicki AB, et al. Advances in prevention of cervical cancer and other human papillomavirusrelated diseases. Pediatr Infect Dis J 2006;25:65–81. [4] Bertram CC, Magnusson L. Informational needs and the experiences of women with abnormal papanicolaou smears. J Am Acad Nurse Prac 2008;20:455–62. [5] Clarke P, Ebel C, Catotti D, Stewart S. The psychosocial impact of human papillomavirus infection: implications for health care providers. Int J STD AIDS 1996;7:197–200. [6] Cohen L, Manion L, Morrison K. Research methods in education. New York: Routledge; 2007. [7] Glaser BG, Strauss A. The discovery of grounded theory. Chicago: Atherton; 1967. [8] Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills: Sage; 1998. [9] Strauss A, Corbin J. Basics of qualitative research: techniques and procedures for developing grounded theory. Thousand Oaks: Sage; 1998. [10] Walsh RA, Girgis A, Sanson-Fisher RW. Breaking bad news 2: what evidence available to guide clinicians? Behav Med 1998;24:61–73. [11] Girgis A, Sanson-Fisher RW, Schofield MJ. Is there consensus between breast cancer patients and providers on guidelines for breaking bad news? Behav Med 1999;25:69–77. [12] Mager WM, Andrykowski MA. Communication in the cancer ‘bad news’ consultation: patient perceptions and psychological adjustment. Psychooncology 2002;11:35–46. [13] Sparks L, Villagran MM, Parker-Raley J, Cunningham CB. A patient-centered approach to breaking bad news: communication guidelines for health care providers. J Appl Commun Res 2007;35:177–96. [14] Ye J, Rust G, Fry-Johnson Y, Strothers H. E-mail in patient–provider communication: a systematic review. Patient Educ Couns 2010;80:266–73. [15] Kleiner KD, Akers R, Burke BL, Werner EJ. Parent and physician attitudes regarding electronic communication in pediatric practices. Pediatrics 2002;109:740–4. [16] Moyer CA, Stern DT, Dobias KS, Cox DT, Katz SJ. Bridging the electronic divide: patient and provider perspectives on e-mail communication in primary care. Am J Manag Care 2002;8:427–33. [17] Sittig DF, King S, Hazlehurst BL. A survey of patient–provider e-mail communication: what do patients think? Int J Med Inform 2001;61:71–80. [18] Houston TK, Sands DZ, Nash BR, Ford DE. Experiences of physicians who frequently use email with patients. Health Commun 2003;15:515–25. [19] Neville RG. E-mail consultations in general practice. Br J Gen Pract 2004;54:546. [20] Hurley RJ, Kosenko KA, Brashers D. Uncertain terms: message features of online cancer news. Commun Monogr 2011;78:370–90. [21] Ilic D, Risbridger G, Green S. Searching for information on prostate cancer screening: an assessment of quality. Urology 2004;64:112–6. [22] Griffiths KM, Christensen H. The quality and accessibility of Australian depression sites on the world wide web. Brit Med J 2002;176:S97–104. [23] Lewiecki EM, Rudolph LA, Kiebzak GM, Chavez JR, Thorpe BM. Assessment of osteoporosis-website quality. Osteoporos Int 2006;17:741–52. [24] Croft DR, Peterson MW. An evaluation of the quality and contents of asthma education on the world wide web. Chest 2002;121:1301–7. [25] Rogg L, Loge JH, Aasland OG, Graugaard PK. Physicians’ attitudes towards disclosure of prognostic information: a survey among a representative crosssection of 1605 Norwegian physicians. Patient Educ Couns 2009;77:242–7. [26] Shields CG, Coker CJ, Poulsen SS, Doyle JM, Fiscella K, Epstein RM, et al. Patientcentered communication and prognosis discussions with cancer patients. Patient Educ Couns 2009;77:437–42. [27] Davis J, Foley A, Crigger N, Brannigan MC. Healthcare and listening: a relationship for caring. Int J Listen 2008;22:168–75.
Contents lists available at SciVerse ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Patient perception, preference and participation
Diagnosing women with HPV: The impact of diagnosis disclosure methods Jacquelyn A. Harvey-Knowles a,*, Kami A. Kosenko b a b
Department of Communication, University of Washington, Seattle, USA Department of Communication, North Carolina State University, Raleigh, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 4 October 2011 Received in revised form 30 December 2011 Accepted 1 February 2012
Objective: Little data exists on women’s HPV diagnosis encounters. This research focuses on impacts of the communicative medium used to inform women of their HPV status. We conducted a qualitative study to identify the mediums used to communicate HPV diagnoses and the impact of each medium on the diagnosis experience. Method: Twenty-five women with HPV completed semi-structured interviews, which we recorded and transcribed. We relied on grounded theory techniques in both data collection and analysis. Results: There are three primary mediums health care providers use to inform women of their HPV diagnosis: phone calls, mailed letters/email, and face-to-face interactions. Implications regarding each medium are identified and discussed. Conclusion: There are drawbacks associated with the use of each medium that healthcare practitioners should be aware of and seek to avoid. Practice implications: Healthcare providers can utilize descriptions of diagnosis encounters and the recommendations accompanying them to understand and modify ways they choose to inform individuals of an HPV diagnosis. Published by Elsevier Ireland Ltd.
Keywords: Diagnosis Women’s health Qualitative Sexual health Illness and disease
1. Introduction Human papillomavirus (HPV), the most common sexually transmitted infection in the US, affects approximately 20 million women. Virologists have identified more than 40 different strands of HPV that can be sexually transmitted and cause different reactions in the host [1]. Although some infections resolve spontaneously and cause little to no symptoms, others can result in genital warts, recurrent respiratory papillomatomis (RRP), and/ or cancers of the vagina, vulva, anus, penis, and cervix [1,2]. It has been estimated that approximately 75% of women who are sexually active will be diagnosed with HPV during their lifetime [3]. Although HPV is not curable, some strands are preventable. In 2006, the Food and Drug Administration approved the first HPV vaccine. The vaccine protects individuals from strands 6, 11, 16, and 18, two of which (16 and 18) cause approximately 70% of all cervical cancers [4]. Although the vaccine is now available, it will take time to create a noticeable reduction in the number of individuals infected [2]. In addition, the vaccine is only available to women under the age of 26, leaving a large number of the
* Corresponding author at: University of Washington, 340M CMU, Box 353740, Seattle, WA 98125, USA. Tel.: +1 919 438 7055; fax: +1 206 616 3762. E-mail address: [email protected] (J.A. Harvey-Knowles). 0738-3991/$ – see front matter . Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2012.02.002
population unable to be vaccinated. As such, many health organizations are now making routine HPV testing and screening a priority. Research indicates that participating in these tests and receiving a HPV diagnosis can create considerable psychosocial stress. Studies have highlighted negative consequences including depression, sleep disturbances, psycho-somatic responses, and sexual impairments. For example, of the 489 individuals with HPV surveyed by the American Social Health Association (ASHA), 75% reported feeling depressed and/or angry about the diagnosis and 66% described feeling ashamed. In addition, more than 50% commented on the lack of emotional and informational support offered by their health care providers [5]. Given that information and social support moderate the negative effects of HPV testing and diagnosis [4], this lack of support is of particular concern. With more women being screened for, vaccinated against, and/ or diagnosed with HPV, patient education and counseling efforts are increasingly important; however, few, if any, studies address patient experiences and perceptions of provider support during HPV diagnosis. The current study aims to fill this gap by addressing the following research questions: RQ1: How are women informed of their HPV status? RQ2: How do diagnosis experiences impact women with HPV?
J.A. Harvey-Knowles, K.A. Kosenko / Patient Education and Counseling 88 (2012) 152–156
2. Method As part of a larger study on stress and coping with HPV, we collected qualitative descriptions of women’s diagnosis experiences. In the sections that follow, we describe the participants recruited and procedures employed in this study.
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or insight related to any of the topics of discussion. We distributed a description of the categories and subcategories, along with illustrative quotations, to a small subset of participants who assured us of our categorical system’s accuracy and completeness. These member checks with five participants gave us confidence in the validity of our findings.
2.1. Participants 3. Results Twenty-five women living with HPV voluntarily completed semi-structured interviews ranging from 14 to 72 min in length. Thirteen (52%) participants self-identified as White, seven (28%) as African American, two (8%) as Latina, two (8%) as Asian American, and one (4%) as biracial. Participant ages ranged from 19 to 56 years (M = 28.84; SD = 8.56). The majority of participants (68%) indicated that they were single; six (24%) were married and two (8%) were divorced or separated. Time since diagnosis ranged from 1 to 17 years (M = 4.84; SD = 4.74). 2.2. Procedure To recruit participants, we hung advertisements in public libraries, coffee shops, grocery stores, and buildings on college campuses. We also distributed study announcements via electronic bulletin boards, social medial websites, and online support groups. Recruitment materials contained a description of the study (i.e., ‘‘one-on-one, face-to-face interviews’’), the inclusion criteria (i.e., women ages 18 or older who had been diagnosed with HPV), and researcher contact information. We also offered a $15 incentive for participation. Potential participants contacted us via email or telephone, and we arranged interviews with those who met the study criteria. We began each interview with the participant signing an informed consent document and completing a short demographic questionnaire. Then, we described the purpose of the project and requested permission to audio-record the discussion. We structured the interview chronologically, beginning with questions about the participants’ experiences at the time of diagnosis followed by a series of questions about their current experiences managing HPV and its associated stress. Although the women’s current experiences with HPV are beyond the scope of this paper, we analyzed the interviews in their entirety and determined saturation on all topics covered, not just the ones addressed in this paper. Grounded theory methods informed our approach to data collection and analysis. For example, we collected and analyzed data simultaneously, which allowed us to assess emerging themes and pursue particularly fruitful lines of inquiry. Concurrent data collection and analysis also helped us determine when we had reached theoretical saturation, the point at which ‘‘no new insights, codes or categories are produced even when new data are added, and when all of the data are accounted for in the core categories and subcategories’’ [6]. Data analysis involved the use of constant comparative and latent content analytic techniques [7,8] and proceeded in stages. First, we completed open coding, in which ‘‘concepts are identified and their properties and dimensions are discovered in the data’’ [9]. Once each author had completed the open coding process, we met to compare and compile our findings. In the second stage, each author returned to the transcripts to complete axial coding, which involved ‘‘relating categories to subcategories’’ [9]. After independently reviewing the transcripts, we met once more to discuss the findings and come to a consensus on the categories and subcategories identified. We resolved any coder disagreements through discussion and continued to interview participants to test and refine our categorical system. Interviews proceeded until they produced no new information
Health care providers delivered the HPV diagnosis in one of three ways, each of which was deemed problematic by at least some of the participants. Participants received their diagnosis over the phone, in mailed letters and emails, and in face-to-face discussions with health care providers. Both the medium and message strategies employed by health care providers influenced how women coped with the diagnosis and evaluated the provider’s supportiveness. Each medium employed and its impact on participants is described below. Names referenced in the following sections are pseudonyms. 3.1. Diagnoses by phone Twenty-five percent of participants were notified of their HPV diagnosis over the phone. Results indicated that the use of this medium created (a) privacy management concerns and impacted participants’, (b) information-seeking strategies. 3.1.1. Privacy management Privacy management issues arose for women informed of their HPV status over the phone. Most participants who were informed in this manner mentioned receiving the phone call at a time when they were not free to talk. Alexandra explained, ‘‘I was in class, and they were calling me. . .I stepped out to go listen to the voicemail because it freaked me out.’’ Katie stated: ‘‘I was told at work. . .I mean, I basically didn’t want these people to know. . . Now at that point, over the phone, I didn’t ask questions.’’ Laura had a similar experience: ‘‘They called my work number. . .I was just like, ‘I just can’t discuss it right now; I’m at work.’’’ 3.1.2. Information seeking Privacy management issues precluded information seeking during phone diagnoses, leaving women with a number of unanswered questions. Participants sought answers to their lingering questions in one of two ways: (a) by researching HPV information online or (b) by re-contacting one of their healthcare providers at a time when privacy was not a concern. For example, Michelle stated, ‘‘I didn’t know too much about it prior to hearing about it, but then I did research and stuff.’’ Eileen mentioned doing the same: ‘‘We had to sit down and look it up on the Internet.’’ For Nina, relying on the Internet for information about HPV was not without its problems: Well, it made me really get on the Internet and do my own research, which can be helpful, but it can also be very harmful. And, I became very obsessive about checking the Internet every day. Was there new research? Instead of seeking information online, some participants chose to re-contact their health care providers to ask questions. As Laura explained, ‘‘I called back and actually spoke to one of the nurses who had come into my job frequently. I felt comfortable talking with her.’’ Michelle did the same after her initial phone diagnosis: ‘‘When I went in for follow-up, we talked about it.’’ For participants diagnosed over the phone, privacy concerns prevented information seeking at the time of diagnosis; consequently, some turned to the
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Internet and others waited until their next appointment to get their questions answered. 3.2. Diagnoses by letter or email Twenty-nine percent of participants were notified of their HPV status through either a mailed letter or email. Comments from these participants indicated that email and letter diagnoses undermined (a) the support process and (b) women’s ability to make sense of the diagnosis. 3.2.1. The support process Most women who were informed of their status via a letter or email expressed dissatisfaction with this notification method. Letter and email diagnoses did not allow women to ask questions or providers to offer support. As such, women informed in this manner described feeling scared and alone. For example, Tori mentioned feeling ‘‘terrified’’ by the letter, stating, ‘‘It would have been better to get like face to face contact or to, like, I guess some people have you come back to get your results.’’ Rachel shared a similar experience: The email was really like very cold and like to the point. . .So, yeah, I think it was probably one of the worst ways to find out that there’s something wrong with you. . .I just felt like my world was ending. . .And I had all these questions. I didn’t know where to go or who to talk to. Although most women expressed dissatisfaction with this notification method, some participants informed in this manner had more positive experiences. Tilda provided one such example: Luckily, I don’t know if this is just the practice of my doctor’s office, but they write a note like, ‘‘Hey, it’s okay. This isn’t like a mega big deal. . .We’re going to be here for you. There’s no real reason to worry yet.’’ That kind of stuff. So that was really reassuring. That kind of dulled the ‘‘Oh my God’’ of the letter. . .that made me feel like this is manageable, you know, it’s going to be okay. Tilda described a situation in which message strategies employed by her health care provider were able to overcome limitations of the communication medium employed. In general, participants perceived letters and emails to be an impersonal and ineffective notification method; however, the efficacy and effects of this method were at least partially dependent on the messages contained in the letters and emails. 3.2.2. The sense-making process Email and letter diagnoses left no room for questions or discussion, which made it difficult for women to make sense of the diagnosis. Women informed in this manner described feeling confused and uncertain about the meaning of the diagnosis. As Rachel explained, ‘‘I was scared to death. I didn’t know what that meant. . .I was really confused.’’ Telesha also had trouble making sense of the diagnosis. She stated, ‘‘I was a little confused and I didn’t know – I didn’t understand – because, when I was 18, I got the Gardisil. And, so, I was under the impression that I’d be okay.’’ Unlike Rachel who had never heard of HPV prior to being diagnosed, Telesha had been informed about and vaccinated against the virus. Even armed with knowledge about HPV and a vaccination, Telesha still experienced problems making sense of her diagnosis. All participants diagnosed in this manner described making follow-up appointments to facilitate sense making. As Telesha explained, ‘‘I made a follow up visit because I was confused. . .So, we sat there, and we talked about it.’’ Tori also contacted her health
care providers: ‘‘I immediately called and talked to them and said, ‘I just got this yesterday. I don’t know what I’m supposed to do. . .I really don’t know how this works at all.’’’ At first unable to make sense of the diagnosis, Telesha and Tori found some answers to their questions when they made follow-up appointments. For participants, email and letter diagnoses contributed to support challenges and sense-making difficulties. 3.3. Diagnoses during face-to-face interactions Forty-six percent of HPV diagnoses were communicated during a face-to-face interaction. Participant comments indicated effects of this medium on the kinds of (a) information and (b) support sought and received. 3.3.1. Information Unlike phone diagnoses, which restricted women’s ability to share and gather information, face-to-face diagnoses provided a forum for questions and discussion. One common feature of faceto-face diagnoses was the provision of informational pamphlets. As Meg explained, ‘‘Most doctors tell you your diagnosis, and then you just walk out of the office. This particular doctor actually told me my diagnosis and gave me pamphlets so that I could read about it.’’ Jenna mentioned a similar experience: ‘‘She [her physician] gave me a pamphlet about all of it. . .It did the whole ‘one out of four girls have it,’ so that helped a lot.’’ Although face-to-face diagnoses gave women a chance to seek information and support from their providers, some participants described being too emotional to take advantage of this opportunity. As Jenna explained, ‘‘I felt horrible. I was a mess. I was too in shock. . .to ask questions.’’ When the shock subsided, these women, like those diagnosed over the phone, sought answers to their questions online. Christine provided one such example: I had no idea what this thing was, and my doctor’s telling me like, ‘‘Oh you have this HPV infection’’. . .And, I kind of freaked out. . .I don’t think I asked her too many questions at that point cause I was just kind of like taken aback by it all. . . I know that I did a lot of research on my own afterwards – a lot of online research. For participants, face-to-face diagnoses influenced the kinds of information received (i.e., informational pamphlets) and the information-seeking strategies employed (i.e., searching for online information once the shock subsided). 3.3.2. Support Unlike email/letter diagnoses, which undermined the support process, face-to-face diagnoses facilitated supportive interactions. For example, communicating the diagnosis face-to-face allowed the health care provider to offer emotional support, often in the form of nonverbal comforting behaviors. As Tara stated, ‘‘My doctor. . .she was holding my hand and told me I had nothing to worry about. She really put me at ease about the whole thing.’’ Jill also stressed the importance of nonverbal communication: I definitely got to talk with a nurse there about it. . .I think they probably made twenty minutes for me to just talk. . .Before I actually left that building and walked out onto the street and was by myself again, there was somebody there listening to my confusion. Altogether, many of the face-to-face diagnoses appeared to provide women with both verbal and nonverbal feedback that was comforting and reassuring. This advantage was lacking in phone and email diagnoses.
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Although many women described receiving emotional support during their diagnosis, others experienced less supportive responses. Similar to email, letter, and phone diagnoses, the effectiveness of face-to-face diagnoses seemed to hinge on message strategies employed by providers. As Rachel stated, ‘‘The doctor was very blunt, like ‘Yeah, you have HPV,’ and did not explain anything. . .It was a really horrible.’’ Wanda also felt that she received little support or information at the time of diagnosis, stating, ‘‘They just told me that I had it, but they didn’t really go in to details as to what it was.’’ Maggie described an experience in which she tried to ask her doctor questions but received only short responses: The doc was like, ‘‘It’s no big deal. Yeah, it’s HPV.’’ And, I was like, ‘‘What do I need to do about it?’’’ She was like, ‘‘Nothing.’’ I was like, ‘‘Is there a medication?’’ ‘‘No.’’ I’m thinking, ‘‘Oh my goodness, will it just go away?!’’ Overall, women’s satisfaction with face-to-face diagnoses varied, depending on the message strategies employed by the health care provider. 4. Discussion and conclusion 4.1. Discussion This study offered insight into the diagnosis experiences of women with HPV. Findings indicated that health care providers delivered HPV diagnoses in one of three ways: over the phone, in a letter or email, or during a face-to-face discussion. Participants described issues with each method. Phone diagnoses created privacy management issues and complicated information-seeking efforts. Email and letter diagnoses undermined sense-making and social support processes; however, supportive messages contained in the emails/letters provided women with some measure of comfort. When participants were diagnosed during face-to-face interactions, some described receiving helpful pamphlets and emotional support; others mentioned less supportive responses from providers. Each of these findings warrants further attention and discussion. 4.1.1. Perceptions and evaluations of each method One fourth of the sample was informed of their HPV status over the telephone. Most of these participants expressed dissatisfaction with the use of this medium, citing privacy issues. Women described receiving these phone calls while at work or in class and not requesting or offering information for fear of being overheard. These findings echo recommendations for bad news delivery put forward by various medical organizations, which stress the importance of delivering bad news in person and in a quiet, private setting [10]. These recommendations also have been validated in various studies of patient and provider preferences for the delivery of bad news. For example, in a study examining concord and discord between patient and provider perceptions of and expectations for bad news delivery, patients, nurses, and physicians each rated privacy and face-to-face discussion as essential elements of the effective communication of bad news [11]. Given that the effective communication of bad news has been linked to important outcomes such as patient compliance with treatment regimens and emotional adjustment [12,13], patient preferences for face-to-face as opposed to phone diagnoses should be given consideration. Despite a growing body of research on email communication between patients and providers [14], few, if any, studies have explored bad news delivered via email. For the women in this study, the use of email for bad news delivery proved extremely
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dissatisfying. In fact, one participant argued that email ‘‘was the worst way to find out’’ about her HPV status. These findings lie in contrast with studies documenting widespread patient interest in and desire for email contact with their physicians [15–17]. Physicians, in previous studies, have expressed less enthusiasm about email communication with patients, citing privacy concerns, billing issues, and potential misuse [18,19]. Findings from this study suggest that both patients and providers should be concerned about the use of email for bad news delivery. Although participants were largely satisfied with face-to-face diagnoses, some women mentioned problematic interactions with providers. In addition, some women who were notified via email or letter described their experience positively, citing a provider’s communication skill and message construction as key. Taken together, these findings indicate that messages, not just communication channels, influence patient perceptions of the diagnosis experience. These findings also highlight particular message strategies deemed helpful and unhelpful. For example, personalized notes included in letter or email diagnoses seemed to provide some measure of comfort to women diagnosed in this manner. In contrast, providers’ curt responses to questions asked during faceto-face diagnoses left women feeling unsupported and unsatisfied. Regardless of the channel employed to communicate a diagnosis, providers should be mindful of their message strategies and potential message effects. 4.1.2. Effects of each method In addition to describing the notification methods of their providers, women with HPV explained how they reacted to and were impacted by these methods. For example, privacy issues prevented women from asking questions during phone diagnoses, prompting women to go online to get answers to their questions. Women who were too shocked and overwhelmed to ask questions during face-to-face diagnoses also turned to the Internet. These findings complement the growing body of research on online health information. Patients’ increasing reliance on the Internet has sparked considerable interest in and concern about the quality of online health information [20]. Scholars have explored website quality in various illness contexts, including cancer [21], depression [22], osteoporosis [23], and asthma [24]; however, few, if any, studies have explored the quantity or quality of online information about HPV. Given women’s reliance on the Internet for HPV-related information, further research is needed to assess the amount, accessibility, and accuracy of information about HPV on the Internet. Participants also described the effects of the notification strategies on their perceptions of and experiences with social support. For example, email and letter diagnoses left no room for information exchange or the provision/receipt of emotional support; whereas, face-to-face diagnoses allowed the health care provider to offer informational support, often in the form of pamphlets, and emotional support, usually involving nonverbal comforting behaviors. Not all face-to-face discussions were perceived as supportive or helpful, though. Provider communication skill or style contributed to women’s satisfaction with the provider and the notification strategy. This may be due to the fact that many physicians less experienced in providing prognostic information feel greater stress when doing so [25], which can hinder their ability to be supportive. Shields et al. provides a remedy to this as their research findings suggest that health care providers should use a tone of voice that indicates care and concern, conveying a willingness to discuss prognosis issues [26]. Communication skills training might also be an effective way to enhance providers’ supportive communication. Researchers believe that ‘‘communication becomes an important, if not the primary, element in provider and patient relationships,’’ [27]
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suggesting that training for these situations is important and beneficial. 4.1.3. Study limitations Several study limitations should be acknowledged. First, difficulties recruiting women with HPV necessitated snowball and convenience sampling, which may have lead to a selection bias. Although this might influence the generalizability of the study, it does not undermine its internal validity. In addition, men were not recruited for this study and represent an understudied group in the literature on HPV. Although the lack of appropriate and effective testing procedures for men complicate research efforts with this population, future research must attend to the psychosocial impact of HPV infection and diagnosis on men. As Waller et al. argued, ‘‘It is perhaps time to reframe cervical cancer as a problem that should concern women’s sexual partners, or the wider community, and not just women themselves’’ [2]. 4.2. Conclusion This study is unique in the fact that it explores the channels and messages that providers use to inform women of their HPV status. It provides evidence that there are flaws inherent in each type of notification method. By identifying these constraints, this study provides practitioners with the opportunity to understand benefits and drawbacks of each method, giving them the ability to modify or revise their own strategies. 4.3. Practice implications Study findings indicate some ways in which providers might modify or revise their notification strategies. First, providers should be mindful of the privacy issues associated with phone diagnoses and the potential impact on a patient’s ability and willingness to share and request information. As such, contacting a patient by phone might be advised when the news is positive but avoided when the news is negative. Emails or letters to patients might save time and money; however, the use of these channels can undermine support and sense-making processes. To facilitate these processes, providers who use email or letters to inform patients about their diagnoses should consider including personalized notes, informational pamphlets, and/or links to quality websites and online support groups. Face-to-face delivery of bad news, though seemingly preferred over phone, email, and letter diagnoses by women with HPV, still requires some communicative finesse. Regardless of the notification strategy they employ, providers must remain adamant in their efforts to communicate care and concern when diagnosing a patient. We confirm that all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.
Acknowledgements The authors received no financial support for this study and report no conflicts of interest.
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